Olympic Hopeful Works To Improve Bone Marrow Registries

Starting a bone marrow registry in Nigeria "became an obsession" for Seun Adebiyi. "I thought that even if I couldn't find a match, I wanted to make it easier for other black patients to find a match."

Adebiyi is training to compete in the Skeleton at the 2014 Winter Olympics after his battle with cancer.

Liana SchapiroSeun Adebiyi

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Originally published on May 27, 2015 10:45 am

When Seun Adebiyi, a Nigerian-American lawyer and aspiring Olympic athlete, was diagnosed with a rare form of leukemia in 2009, he quickly found that it was not going to be easy to find treatment.

As he explains it, "my only chance of survival" was a stem cell transplant. These transplants either come from bone marrow or blood, and the best matches usually come from within the same ethnic group.

If you are from an ethnic minority group, it's not so easy to find one.

Adebiyi didn't have a full sibling, so he had to turn to a national registry in the U.S. to find an unrelated donor.

African-Americans only make up 8 percent of the bone marrow registry and, as Adebiyi learned, they tend to be more genetically diverse than Caucasians.

"The theory behind that is that civilization started in Africa so you have a big melting pot there, whereas the groups that branched out to Europe and America were more genetically homogeneous," he explains.

According to the New York Stem Cell Foundation, African-American patients have less than a 17 percent chance of finding a bone marrow match compared to 70 percent of Caucasian patients.

Struggling to find a match, Adebiyi turned to his native Nigeria to do a bone marrow drive, but he was told that he couldn't hold one because Nigeria didn't have a registry.

"It became an obsession," he says. "I thought that even if I couldn't find a match, I wanted to make it easier for other black patients to find a match."

In late 2009, Adebiyi made an agreement to store the Nigerian donors on the South African registry, and he held Nigeria's first bone marrow drive.

He didn't find a match there, but as soon as he was released from hospital after his own stem cell transplant, he set up and launched a separate registry in Nigeria. It's publicly accessible and is available to find suitable donors for patients of African ancestry in the rest of the world.

Adebiyi describes his own transplant as "a miracle." A Nigerian woman gave birth to a healthy baby in the United States about six months after he was diagnosed. Luckily, someone had told her that she had the option to donate her umbilical cord blood to an American public bank. It was a match for him.

That donation saved his life, but it also made him realize how others were losing theirs because of a lack of awareness and education.

"Most people think that a bone marrow donation is very painful when the truth is, it's most often collected as a blood donation, and to join the registry takes nothing more than a cheek swab," he says.

Adebiyi also points to a lack of education in the medical establishment.

"There's a kind of psychological paralysis that infects our medical community and makes people think that saving lives by collecting cord blood and bone marrow in Africa is just impossible."

His work has proved them wrong. At one drive in 2009, they recruited 300 donors on to the Nigerian registry, and it has already found 3 potential matches. They are also now launching an umbilical cord blood bank.

"It's a tragedy to think that there are millions of cord bloods in Africa that could save millions of lives, and they are just being discarded as medical waste because there are no storage facilities or cord blood banks in the entire continent of Africa," he says.

The cord blood bank is of particular interest to African-Americans who can't find bone marrow donors. "Certain studies have compared cord blood to bone marrow and found that a cord blood bank of 50 thousand units could provide as many transplants as a bone marrow registry of 5 million people."

Adebiyi describes becoming a donor "as almost like an insurance scheme." Before he was diagnosed, he was a young, healthy, aspiring Olympic athlete with no history of cancer in his family, "so this is something that can happen to anyone," he says. "The last thing you want is to be in a situation where you can't find a donor and you have regrets to think, well, what if there were more people?"

He is now focused on moving forward with his projects in Nigeria, as well as training for the skeleton at the Winter Olympics in 2014. "I'm terrified every time I stand at the top of the track. You're running at a full sprint for 10 or 15 meters and then you dive on a sled that doesn't have any brakes, head first, and you go down this mile-long ice chute at 80 miles an hour, but I try to console myself by saying, I've already had cancer, what's the worst that could happen?"

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Transcript

MICHEL MARTIN, HOST:

Finally today, we want to highlight another health issue. Earlier today and throughout the week, we'll be talking about global efforts to fight HIV and AIDS. But we can't forget that cancer remains a major killer. Even though there are highly effective treatments for many cancers, stem cell transplants are one of those treatments, but it's still not so easy to get one if you need one. And it's even harder if you're from an ethnic minority group. Stem cell transplants either comes from bone marrow or blood and the best matches are most likely found within the same ethnic group.

But according to the New York Stem Cell Foundation, African-American patients have less than a 17 percent chance of finding a bone marrow match. That's compared to 70 percent of Caucasian patients.

Our guest today is Seun Adebiyi. He is a dual citizen of Nigerian and the U.S. He's a lawyer by training and aspiring Olympic athlete. And he has created the first bone marrow registry in Nigeria. Since it's a public bank, the registry won't just offer hope to Nigerians, but it will improve the odds that patients with African ancestry in this country will be able to find a suitable donor.

And Seun Adebiyi has personal reasons for his involvement in this work as well, and he's going to tell us about it now.

Welcome. Thanks so much for joining us.

SEUN ADEBIYI: Thank you for having me on your show.

MARTIN: So in 2009, you were given a diagnosis that really changed your life. Can you tell us a little bit about it?

ADEBIYI: I had just graduated from Yale Law School. I was 26 years old. And I notice some small lumps near my groin. I went into student health and at first they weren't concerned. They thought I was very active and had no reason to worry. However, the lumps kept getting bigger, so I had a biopsy and it turned out that I had lymphoma. Even then, though, they cautioned me not to get too upset because it was a kind of lymphoma that responded to chemotherapy. However, when I did a bone marrow aspirate, they couldn't extract any marrow of my bones. Instead of bone marrow, I only had scar tissue and that's when they discovered that I had a rare form of leukemia nicknamed stem cell leukemia. So the stem cells in my bone marrow, when they matured, instead of turning into lymph cells became lymphoma. And instead of turning into bone marrow, they became scar tissue. My only chance of survival was a bone marrow transplant.

MARTIN: And where you able to find one?

ADEBIYI: I wasn't. I was, I didn't have a full sibling, so I had to turn to the registry to find an unrelated donor.

MARTIN: And that's how you figured out just how difficult it is for people with ethnic minority backgrounds to find a match. Now is that, you know, why is that? Is that because there are fewer people of color, African-Americans in particular, on the registry? Or is it because African-Americans are just - what's the word - genetically more complex as a population than Caucasians are?

ADEBIYI: It's both. African-Americans generally tend to be more genetically diverse than Caucasians. And the theory behind that is that civilization kind of started in Africa so you have a big melting pot there, whereas the groups that branched out to Europe and America were more genetically homogeneous. But the fact is African-Americans only make up 8 percent of the bone marrow registry.

MARTIN: Well, I just - I do want to mention, you are looking great now, so something must have worked out for you. You were eventually able to find a match for your transplant. How did you go about finding that?

ADEBIYI: It was a miracle. A Nigerian woman who was living in the United States gave birth to a healthy baby about six months after I was diagnosed and someone had told her that she had the option to donate her cord blood to a public bank. And because of that information she did and it was a match for me and saved my life.

MARTIN: And literally meaning save your life, forgive me for even asking such a question, but where would you be now if she had not done so?

ADEBIYI: I certainly would not be here.

MARTIN: Yeah.

ADEBIYI: And it's a tragedy to think that there are millions of cord bloods in Africa that could save millions of lives and they are just being discarded as medical waste because there are no storage facilities or cord blood banks in the entire continent of Africa.

MARTIN: How did you get the idea for this registry that you are now setting up?

ADEBIYI: Well, I wanted to do a bone marrow drive after I was diagnosed but I was told I couldn't hold one because Nigeria didn't have a registry. So it became an obsession. I thought that even if I couldn't find a match, I wanted to at least make it easier for other black patients to find a match. So I flew to Nigeria in December of 2009, and held the country's first bone marrow drive.

Since we didn't have a registry, we stored our donors on the South African registry, and then as soon as I was out of hospital and able to resume working, I pressed forward with the goal of launching a separate registry in Nigeria.

MARTIN: What's the biggest impediment to doing this? Is it that people don't understand it or that they think that there is some sort of, you know, nefariousness going on? You know, in this country there's still a skepticism about the medical establishment held by many people in the African-American Diaspora for all kinds of reasons that, you know, I think many people know very well. What is it?

ADEBIYI: The biggest obstacle I've run into is lack of awareness and lack of education. Most people think that bone marrow donation is very painful. When the truth is, it's most often collected as a blood donation, and to join the registry takes nothing more than a cheek swab. And moreover, it doesn't cost the donor anything. All the cost are covered by the patient or the patient's insurance.

There's also a lack of education in the medical establishment. I spoke to a transplant physician when I was diagnosed about the possibility of starting a cord blood bank in Africa and she said, honestly, I don't see a cord blood bank happening during my lifetime.

MARTIN: Why?

ADEBIYI: I don't know. I...

MARTIN: She doesn't think they have refrigerators in Africa? What's the issue here? What?

(LAUGHTER)

ADEBIYI: There's a kind of psychological paralysis, I think, that infects our medical community and makes people think that saving lives by collecting cord blood and bone marrow in Africa is just impossible. And the fact is, even though I don't have any formal medical training whatsoever, I was able to launch a registry. This is something that can be done very easily, and it should be done.

MARTIN: How many people are on the registry now?

ADEBIYI: The number of donors that we recruited in 2009 at one drive were 300, and it's already found three potential matches, which is extremely exciting. What's even more exciting is that we are now launching a cord blood bank, which is particularly of interest to African-Americans who can't find bone marrow donors.

Certain studies have compared cord blood to bone marrow and found that a cord blood Bank of 50,000 units could provide as many transplants as a bone marrow registry of five million people.

In Nigeria, there are 140-plus million people. Think of the lives that could be saved if we could just harvest this cord blood?

MARTIN: If you're just joining us, I'm Michel Martin and this is TELL ME MORE from NPR News. We're talking about one man's mission to help combat the difficulty of finding stem cell transplant matches for people with African ancestry - that's both people in Africa and people who trace their ancestry to Africa. Our guest is Seun Adebiyi, who set up the first bone marrow registry in Nigeria. And because this is a public registry, it will benefit people who are in Nigeria and other countries as well, including the United States.

So let's say people are thinking of becoming a donor, what's important to know?

ADEBIYI: Anyone could become a donor between the ages of 18 and 60. You have to be in good health. They won't let you donate if it's a risk to you. And the easiest way to become a donor is to either go to a bone marrow drive or just go online. There are websites that will actually mail you a cheek swab kit and you can send it back.

MARTIN: Why would you want to? For somebody who is listening to our conversation, and they're saying why do I want to do this? I don't know anybody who's got that particular form of leukemia. I do know, nobody in my family is sick. Why do you want to?

ADEBIYI: Well, stem cell transplants aren't just for leukemia. They can actually cure over 70 diseases, including sickle cell, which is a scourge in the African-American community. But more importantly, it's almost like an insurance scheme. Prior to my diagnosis, I had no history of cancer in my family, so this is something that can happen to anyone. And the last thing you want is to be in a situation where you can't find a donor and you have regrets to think, well, what if there were more people?

I remember when I was looking for a donor, I used to walk down the sidewalk in New York City at all times of the day and look intently at each person passing me and thinking, could that person save my life?

MARTIN: Well, on a happy, equally happy note, I want to say happier note, but it didn't equally happy note. I do want to mention the Olympics are coming up very shortly and that has also been a long-term personal goal of yours. You once set your sights on swimming but I think you put it this way yourself, you are no Michael Phelps...

(LAUGHTER)

MARTIN: ...but you have also then since switched to training for the skeleton at the Olympics.

ADEBIYI: That's true.

MARTIN: So how's that going?

ADEBIYI: It's going very well. I...

MARTIN: It's a little crazy.

ADEBIYI: It's...

(LAUGHTER)

MARTIN: I'm sorry. I hate to say it. I mean I'm sorry, not trying to be ugly about this, but the Winter Olympics, Nigeria, people don't quite see how that matches up, but I'll just say it that way.

(LAUGHTER)

ADEBIYI: Everyone mentions cold weather. And I tell them actually my skeleton coach was the coach at the Jamaican Bobsled Team.

MARTIN: Is that true?

ADEBIYI: It's true.

MARTIN: OK.

ADEBIYI: It started out almost as a prank. I thought well, Nigeria doesn't have a Winter Olympic team so I wouldn't have any competition in the country. So...

MARTIN: They have no Winter Olympic team at all.

ADEBIYI: They've never been to the Winter Olympics in any event.

MARTIN: So you get to carry the flag.

(LAUGHTER)

MARTIN: You get the whole kit. You get the whole uniform kit.

(LAUGHTER)

ADEBIYI: Absolutely. But after I went through this experience, I realized that I could also use the Olympics as a platform. There is unfortunately, a huge stigma about cancer in Africa. It's just not talked about. There's a lot of shame and cancer patients are often ostracized at the very time that they need their community support. So I would like to raise awareness about the issue and make people talk about it. Make it OK to show cancer isn't a death sentence, and it's certainly nothing to be ashamed of.

MARTIN: So how is the training going?

ADEBIYI: You know, I'm terrified every time I stand at the top of the track. You're running at a full sprint for 10 or 15 meters and then you dive on a sled that doesn't have any brakes, head first, and you go down this mile-long ice chute at 80 miles an hour, but I try to console myself by saying, I've already had cancer, what's the worst that could happen?

(LAUGHTER)

MARTIN: Good point. I'm going to see if your mother agrees with that. But anyway, I'll talk to her later.

Seun Adebiyi, he set up the first bone marrow registry in Nigeria. And as you mentioned, he's not busy enough, so he's also training for the Winter Olympics in 2014 in the skeleton. And he was kind enough to take a break from his busy schedule to join us in our studios here in Washington, D.C.

Seun, thank you so much for speaking with us.

ADEBIYI: Thank you for having me.

(SOUNDBITE OF MUSIC)

MARTIN: And that's our program for today. But before we go, we'd like to welcome a new station to our listening family, WWNO of New Orleans. I'm Michel Martin and this is TELL ME MORE from NPR News. Let's talk more tomorrow. Transcript provided by NPR, Copyright NPR.